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User
Posted 26 Nov 2025 at 20:04

Background …. Recently retired 68 yr old, living in S.Wales   No private insurance, so NHS or self fund.

My journey started after GP annual ‘Well man’ clinic showed a significant jump in PSA score, from 1.4 to 6.4.     
In 2013 Biopsy showed Pinin areas, started on Finesteride to drop PSA score, regular checks (with DRE) and LUTS clinic measured significant urine flow restriction. Also take Tamsulosin, but provides little help.  By 2021 now down to 2 hrs sleep if lucky, typically though it’s up every hour.

Consultant recommended intervention treatment, his first offer TURP I declined due to side effects, next advice was HOLEP, but NHS Wales currently has 2 year wait for treatment.

Earlier this year score again jumped, and after multi-phasic MRI, in September a much more detailed transperineal biopsy …. And the bad news.

Gleason Score 7 (4+3)

TStage T2

CPG 3

Followed by Bone Scan, but no spread, so currently still localised.

Given a number of multi page fact sheets, one per option … and asked to elect what treatment I wanted.

After reading through all, along with a fair bit of research, decided to discuss options with Consultant,

Nanoknife .. first choice ….  Especially after the News this week about David Cameron successful treatment by this procedure.     - - Not available on NHS in Wales.

HIFU - - Not available on NHS in Wales.

RT - - Gold standard for this being MR-LINAC.  - - Not available on NHS in Wales.

            Standard LINAC is available in other Health boards, referral may be possible.

            SABR is an option (though longer wait time).        
all will require Hormone therapy. It is possible that the restructure procedure (HOLEP or TURP) may have to be carried out first.

Radical Prostatectomy  via DaVinci robotic surgery is an option, but I want to avoid that due to high risk of incontinence and other side effects.

For the procedures not offered by NHS, I can request an RFP submission to SWWCC. (South West Wales Cancer Centre) to fund treatment in NHS England …. But been advised all recent requests have been rejected due to lack of funds.

There does seem to be an option for RT MRI-LINAC at Christie’s NHS Foundation Trust, or as part of treatment trial at Royal Marsden, depending on NHS-Wales submission, so funds may block this.

There is also ‘Self funded’ route, this would be in region of £8,000 for HOLEP and then up to £30,000 for RT MR-LINAC treatment.
Certainly put a big dent in my retirement funds.

Next step is appointment with Oncologist, and I’ll have some tuning of options.

 

 

User
Posted 26 Nov 2025 at 22:47

Originally Posted by: Online Community Member
RT - - Gold standard for this being MR-LINAC.

To be honest, I doubt there are enough of these machines in the world, let alone the UK, for it to be described as gold standard.

However it is unlikely to be a huge advantage over the slightly older (but still pretty new) technology of CT-LINAC. As I understand it the underlying principle is the same. You have an initial high resolution planning scan, on the basis of which the oncologist defines the volume to be targetted by radiation. Then for each radiotherapy session the machine first does a low resolution scan (CT or MR) to allow the machine to work out the deviation from the original planning scan so that the radiotherapy can be adjusted to target exactly the volume to aim at. Each time you use the machine isn't quite going to be the same as the first, you may be in a different position by a few millimetres, and your bladder and rectum might be slightly more or less full - but the machine uses the initial scan to adjust and still aim the beams at the same place. The principle allows the radiation to be far more precisely directed, thus maximising the effectiveness against the cancer location while minimising the effect on neighbouring tissues.

While MR is undoubtedly the most sensitive scan when looking at soft tissues like the prostate, the use is not for high resolution imaging but to give the computer driving the machine the information to adjust the way it delivers radiation. I haven't heard of a head-to-head trial of MR over CT - which is what would be needed before anyone could claim it is a "gold standard" - and my guess is that they won't have much different in effectiveness for localised cancer (though the situation may be different if there is a need to target lymph nodes as well).

I would imagine that most larger centres in South Wales have CT-LINAC, but you would have to check. In my case (different part of the country) only two out of ten radiotherapy machines in the hospital had the CT capability but those were the ones used for prostate cancer. That was three years ago, and my guess is that some more of the older machines will have been changed for the newer technology by now.

User
Posted 28 Nov 2025 at 16:31

Hi, 

It's a good reply from J-B.     Well done for looking into this so deeply but your choices might also be influenced by the size of the lesion and where it's located.  Mine was said to be quite close to the edge which made me want to get it done quickly and it was 12mm and 4+3 at the time so the 4 dominated which isn't the best of news. So I opted for surgery.

Did your doctor offer all those treatments?  Some of them are for small lesions or better for individual isolated lesions.  We all react differently and successful treatment is something that appears more likely with each passing year, perhaps taking a couple of years to get to probable.  Although after surgery a psa of <0.03 is said to be a good sign.  After RT the psa goes to a different level that you need to hold.

We all have different priorities as well.  I was 67 and my top priority by far was survival and they could do what they wanted to assist it. At the time I thought surgery the best as it got you there very quickly whereas now we read more about better RT, although mine was offered with hormones which was a black mark from me and I didn't like the sound of radiation.  It's biggest advantage was to be able to sweep up stray cells nearby.

Good luck with your debate and I hope it goes well.  Peter

 

 

 

User
Posted 28 Nov 2025 at 20:31

It may be worth you speaking to Velindre Centre at Nevill Hall Hospital Abergavenny. This is a new facility only opened a few months ago so may have the latest equipment. 

 
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